IVF & Everafter: The Emotional Needs of Families

Andrew

Forewords

Becoming a parent is a significant event in anyone’s life, but when the path to parenthood is complicated by infertility and infertility treatment it may be even more emotionally difficult. The unfulfilled wish for a baby and the physical, emotional and financial demands of IVF are distressing experiences that can erode a couple’s self-confidence and sense of well-being. Although the chance of having a baby with IVF is improving, most couples who pursue treatment will need several attempts to reach the goal of parenthood. When treatment is unsuccessful or when an IVF pregnancy miscarries, couples describe intense feelings of loss and sadness. Added to this are feelings of personal failure and doubts about whether the dream of a family will ever come true.

Those who persist with treatment and become parents feel extremely grateful that the treatment has worked and have high expectations of life with the new baby. But sometimes the transition to parenthood after IVF poses unexpected challenges. Anxiety about the ability to sustain and keep the baby alive, lack of confidence about the capacity to care for the baby, and feeding and settling difficulties are common after IVF.

While they are involved with the IVF program, couples have access to counselling to help them deal with the ups and downs of treatment. But, once a pregnancy is confirmed, there is little support and information available that meets the needs of couples who become parents after treatment. Nichola Bedos’s IVF & Ever After is a thoughtful and insightful book that explores the emotional aspects of infertility, IVF treatment and parenting after IVF. It is a very welcome resource for health-care professionals and the growing group of couples who become parents after a long and difficult journey.

Dr Karin Hammarberg

Research Fellow, Key Centre for Women’s Health in Society

The University of Melbourne

***

Welcoming a new baby into the world marks a new beginning for any parent, but for many couples experiencing infertility it becomes an even more significant milestone. The explosion in the number of IVF treatments performed in the last decade and the doubling of the success rate of IVF in the last twenty years herald a new generation of IVF families.

The medical technology that has enabled this process has had a profound effect on the lives of numerous families all over the world. While medico-legal, political and ethical dialogues continue to rage around it, IVF technology has paved the way for more than a million miracles to happen, opening doors to older parents, surrogacy and same-sex families.

The journey of every parent is unique and the experience of IVF is intrinsically individual. However, the psychological impact and emotional cost of the IVF process on couples cannot be underestimated. The need for psychological counselling is paramount in supporting their tumultuous emotional journeys. Optimally, psychological counselling must begin as soon as the diagnosis of infertility is made. The euphoria of a successful IVF treatment, resulting pregnancy and successful childbirth is more often accompanied by a myriad of complex emotions tinged by grief and loss. In the event of prematurity or medical challenges, the clinical diagnosis of post-natal depression compounds their emotional vulnerability.

In IVF & Ever After, Nichola Bedos, psychotherapist, has sensitively but candidly captured the unique psychological journey of families who parent the IVF child. This book is an essential tool for health professionals working with IVF families, those exploring IVF as an option and the general community to enhance their understanding and insight into the challenging journey of IVF parenting.

Lisiane LaTouche

Director of Social Work and Psychology, Tresillian, Sydney

Introduction

In 2006 around 4 per cent of all births in Australia, as many as 10 000 babies, were born following in vitro fertilisation (IVF). With new technology achieving success rates that were unthinkable even a decade ago and new practices making the process more affordable, IVF births are set to become a highly significant part of the nation’s fertility rate. Experts predict a figure of about 30 IVF births per 100 births in Australia within twenty-five years.

The technique’s quiet beginnings belied its later success. Few would remember 10 November 1977, even though this day heralded the beginning of the first ‘miracle’ baby, Louise Brown. On that November day her mother Lesley underwent implantation of the fertilised egg—which was to become the world’s first IVF embryo to survive beyond a few weeks’ gestation—back into her womb. At that stage no one, not even the IVF pioneers, had any idea that this procedure would mark their first success. With great excitement, Louise was born by caesarean section on 25 July 1978. Three decades later, IVF has been used in the creation of over one million babies around the world.

As with all of the world’s human-made miracles, media headlines have revealed the excitement and the scientific technique but little of the human side to this amazing story. Being the first miracle baby, Louise has endured much media attention. Interviews throughout her life to date have revealed a very sensible and practical person who has suffered the intrusion into her private life with dignity. What has never been described was the emotional roller-coaster ride experienced by Louise’s parents. They lived through a nine-year struggle to become pregnant and the devastation of a diagnosis of blocked fallopian tubes, and finally experienced hope when Doctors Edwards and Steptoe offered them the opportunity of IVF treatment. There must have been anxiety throughout the pregnancy and feelings of absolute elation, combined with deep apprehension as the date of the birth neared.

How did IVF influence Louise’s approach to becoming a mother herself? She gave birth to a son late in 2006. What will she tell her child when it comes time to discuss ‘where babies come from’?

The science has made miracles happen. But there is a cost. The year 2003 marked an important turning point in IVF treatment. Research published then found that the use of this technique does impact upon the psychological well-being of both parents and child. Successful IVF treatment brings joy on a scale that is unimaginable to those who conceive without assistance, yet studies reveal this joy is also mixed with deep-seated anxiety. For truly informed consent to be obtained before couples undergo IVF treatment, they need to understand the factors that can affect their physical and mental health and how to access help to sensibly deal with these stresses.

Promising research by clinical teams around the world points the way to understanding the stress that IVF couples experience. It has been known for years that infertility can lead to anxiety and depression in both men and women and that it plays a role in some relationship breakdowns. A 2003 report published in the Journal of Marriage and Family indicated that involuntary childlessness poses a significant risk to women, even if those women go on later to have a child of their own through assisted means.[1]

Once a couple has been confirmed suitable for IVF, participation in treatment is a relief; however, partners often rate the technique itself as highly stressful, with women generally experiencing this stress to a greater degree than men. Women handle treatment stress quite differently to men: a 2006 study revealed that they seek support and talk about the difficulties, whereas men distance themselves or engage in problem-solving behaviour.[2] The stress can actually get in the way of IVF success because it reduces both sperm quality and the chance of an embryo developing inside the womb.

A pregnancy after IVF treatment produces excitement mixed with frequent periods of anxiety during the early months as the parents-to-be-await the three-month point when the rate of miscarriage falls dramatically. Parents I have worked with report intense panic reactions to a twinge or spotting episode. They need calm, wise support to deal with these reactions.

IVF parents also benefit from good birth planning because the adoption of sensible strategies, which consider all available options, brings about healthier parent-baby relationships. Good preparation for birth is as vital to parents as intense training is to elite athletes. You come to the stress of the event with clarity of mind.

Once the baby is born, there are areas of parenting that IVF parents can struggle with in the early years. A wonderful Australian study, led by Karin Hammarberg of the University of Melbourne, reveals the issues IVF families face.[3] Over 50 per cent of women using IVF have to struggle to establish care of a newborn after a caesarean section, and IVF parents are nine times more likely to have twins than non-IVF parents. These parents, who are also three times more likely to seek help from parenting centres, have anxiety about and a lack of confidence in their parenting skills. Finally, more than half of all IVF mothers switch to bottle-feeding in the first three months after their baby’s birth, citing failure to establish a ‘good’ milk supply. These are all issues that lead to parental stress, anxiety and depression, yet all are fully treatable.

This book is intended to raise awareness of the emotional issues that can arise during treatment, pregnancy, birth and the years of parenting, and to provide simple, thoroughly researched strategies to address these issues. These strategies act to heal the damage infertility and stressful treatment can cause, leaving parents to raise their children with calm clear minds.

Today, humankind is so much better at scientifically achieving IVF success with healthy births, fewer multiples and fewer premature babies. We have embraced this amazing miracle technique and IVF treatment is now commonplace. It is time to focus on the emotional aspects of IVF. The miracle of life can then be properly enjoyed for a lifetime.

***

Many people helped to create IVF & Ever After. Thank you to Frank for being my sounding board and ‘phrasing stylist’, to my mother Diana for all her proofreading and for being the first person apart from me to tackle the book, and to all associated with Rockpool Publishing for the advice and encouragement to make the idea become a reality. Particular thanks must go to all the professionals who spoke to me and who contributed comments and research: there are a number of amazing people working with IVF families. I am also especially grateful to the wonderful families who have told their courageous stories, allowing me inside their homes and their lives to share the ups and downs of parenting with them. I have incorporated the experiences of many people from all over the world; however, names have been changed to preserve their identities, except when the family concerned has given me their express permission.

1

The Emotional Impact of Infertility

It was distressing for both of us to be constantly asked, ‘Are you pregnant yet?’

One in six Australian couples suffers infertility. Even though we have the technology to work miracles for infertile couples, the emotional consequences cannot be ‘shrugged off’, nor can couples simply ‘get over it’, blindly rushing off to a private clinic to pay for expensive fertility treatment. Those who have been diagnosed with fertility problems require good psychological support to explore the complexities of their feelings before IVF treatment can be successfully attempted. Arriving at the door of an infertility clinic without having reflected on the feelings evoked by a diagnosis of infertility can be disastrous.

‘No matter what the doctor offered us, the diagnosis of infertility was there like a dark cloud hanging over us. I didn’t feel science could ever really overcome it. I felt a failure. It was my fault,’ one woman explained. She later went on to give birth to a healthy little girl, yet she still labels herself ‘infertile’. In common with many other mothers, she has a sense of failure, of needing outside help and sometimes of thinking that the pregnancy and the baby somehow are not truly ‘hers’. It is pervasive, damaging and it is a real threat to parents’ and children’s self-esteem. But it is treatable.

I started working with families with IVF babies in 2002. My counselling practice concentrates on treating families with young children, specialising in helping parents to parent in a more positive way.

At first, when I began working with an IVF family, I downplayed the importance of the manner of conception and treated the family very much in line with the conventional wisdom regarding parents who were experiencing anxiety and difficulty separating from their young child. Although I achieved some success with my normal repertoire of strategies, I found the family’s pervasive anxiety about ‘something being very wrong’ hard to understand. It was only the following year that I came to understand the complexity of the issues IVF raises for prospective parents throughout the treatment process and during parenting. I came to see the tremendous impact IVF can have on the whole family, even extending to grandparents, aunts and uncles.

Treating a family who had not yet set foot inside the door of an IVF clinic startled me. Within weeks, I was questioning how the problems they faced could have arisen without a traumatic event taking place. The family was enormously emotional and irritable, which caused incessant arguments, particularly between mum and dad. There was a lot of anger from unresolved grief over a previous miscarriage. Family functioning was at an all-time low. The family’s two children, who had been conceived naturally, were also exhibiting signs of behavioural disturbance. Although I am not suggesting all families are as traumatised as this one was, I have since found that many do exhibit similar symptoms of stress. At times, particularly during the phases when they are coming to terms with infertility, deciding to use IVF and the treatment itself, emotions arise that are simply too much for a couple to handle alone.

Even after this experience, I was not convinced there was any particular ‘pattern’ of need specific to IVF families. But several months later I began working with another IVF couple and their child. Again I perceived this pervasive fear of loss and the sense of danger that began before the IVF treatment process had commenced, together with the difficulty in separating for both parents and child. I began to sense there was something different about IVF families. I decided that, as a helping professional, I needed greater knowledge about the use of IVF as well as specific therapies to help the family to heal. I undertook research on the subject, finding a few studies that demonstrated heightened anxiety in couples undergoing the procedure. I was unable to find any information directly relating to the situation in Australia.

Recently I completed a small study of my own, a simple analysis of the number of IVF families I was working with as a proportion of my total client base. Surprisingly, in 2005 almost 20 per cent of my clients, twenty of the 100 families then on my books, had used IVF, although this might not have been why the family requested help. In comparison, more than 3 per cent of all births in this country at that time used IVF technology. This research further confirmed my suspicions that there was indeed a pattern of need among IVF families that simply was not being fully recognised and certainly was not being addressed.

The final piece of the puzzle came in the shape of a 2005 study.[1] A research team reviewed the work of parenting centres across Australia, including organisations such as Tresillian, which provide help for parents in settling, feeding and treating post-natal depression. The study found that mothers seeking help at these centres were much more likely to have suffered adverse reproductive issues, such as miscarriage and IVF, than mothers in the general population. Indeed, 6.5 per cent of the mothers attending the centres had used IVF, although they only comprised about 3 per cent of women giving birth. The study included an examination of one case, a couple using IVF to conceive their first child, and the emotional ups and downs that accompanied pregnancy and early parenting.

Other studies were reporting similar findings. Furthermore, Tresillian director of social work and psychology Lisiane LaTouche had also found IVF parents experiencing psychological difficulties. ‘There are a significant number of IVF families attending Tresillian centres,’ she explains. ‘The figures are certainly higher than in 2003/2004 and are rising.’ LaTouche reports complex family presentations: for example, older mothers conceiving through IVF and women giving birth to multiple babies.

My own findings were clearly being replicated elsewhere in Australia. This motivated me to put together a treatment plan for helping these families in need, right through from the infertility diagnosis, the IVF process and pregnancy to the parenting experiences. The plan is flexible in order to accommodate the vastly different situations families may find themselves in, but it always starts with recognising the impact a diagnosis of infertility has on a couple.

Conception today

Our modern society leads us to believe a family of our own is always a choice we are able to make. Couples try to conceive a baby, believing it will only be a matter of time before a successful pregnancy is achieved and a healthy child is born. Advances in medical science have given the human race the sense that ‘everything can be achieved eventually’.

We are bombarded with this ‘we can do anything’ philosophy. The media constantly reports stories about increasingly mature mothers giving birth. Many women feel they are more in control of their bodies than ever before and that age is no longer a barrier to having a career and a family. Expectations are artificially raised.

But, with as many as one in six couples experiencing infertility, these expectations may be shattered. This can leave couples feeling isolated, ‘different’ and eventually like failures. No matter what follows, their self-esteem and psychological well-being suffer sizeable blows.

What I have found from working with IVF families is that these overwhelming feelings from the infertility diagnosis are often left unresolved. IVF clinics offer counselling, but this is focused on the IVF process itself—how to cope with it and what to expect—rather than on the circumstances that brought the couple to the clinics in the first place. Gynaecologists and fertility experts will usually explain the issues around the couple’s problems from the medical points of view, but have little knowledge of what the psychological impacts may be. No one sits down with the couple, acknowledges their huge emotional stress and then tells them how to cope.

When IVF begins, the couple are often not mentally adjusted. Psychological work must begin as soon as an infertility diagnosis is made. For parents who have already given birth to an IVF child, this work can take place retrospectively to avoid unresolved grief affecting the parent-child bond.

The grieving process

The first and most common emotional reactions to a diagnosis of infertility are sadness and loss. The couple need to grieve about the fact that the normal vision of conception and parenthood will not be an option for them. This is an important reaction, not to be devalued or brushed aside, but it needs time and energy to accept.

The grief accompanying a diagnosis of infertility is complex. By this I mean that there are a number of different losses that couples must face. The infertility experts Doctors Aniruddha and Anjali Malpani describe these